The memorial service for Lula yesterday was an absolutely amazing experience. We are still drinking in all of the love and support. We had people from all aspects of our lives, from every point in our lives. I have never been so full of admiration for the human race.

We are so grateful to Catherine at the Brooklyn Society for Ethical Culture, who led the service and who was kind and reassuring through every moment of planning. She completely understood everything we wanted to convey and helped us to make it happen.

We had eight readers who could not have captured Lula's essence and the impact she had on all of us more perfectly. They were all so poised and thoughtful and wonderful. I am especially indebted to my friend Sharda who lent her amazing voice to me. I knew I wouldn't be able to speak and she was able to deliver my feelings better than I ever could.

1. SUSAN WALKER (GRANDMOTHER)

My name is Susan Walker and I am Lula’s grandmother. I will always be Lula’s grandmother, just as all of you will always keep your relationship with Lula. I am also a nurse and so have seen my share of deaths in my chosen profession. I have no great insight into death, but here is what I know; when someone dies, the light changes. Look around you; every person in this room, this world, carries their own light. Lula was a little girl and carried a little light, but it shone brightly and fiercely. That light doesn’t disappear, it is released. It moves into our hearts and lives there, it soars into a welcoming universe.

I want to talk about the beginning, because another thing I know is that every parent in this room remembers their pregnancy, the birth, and the first time they looked into their newborn’s face. My own words were inadequate, so I found a poem by Maureen Hawkins that encompasses, for me, the wonder, joy and complete surrender to the new baby. It’s called, THE MIRACLE, and it’s about the honor of love.

Before you were conceived
I wanted you
Before you were born
I loved you
Before you were here for an hour
I would die for you
This is the miracle of life.
The pain, so great,
Was more than the throbbing of your final journey
Into my love
But part of a process
That came accompanied with
New Life
New Consciousness
New Understanding
New Wisdom
A bigger heart
New Love
At last Liberation
At last Freedom
How special, how valuable
How close to all things right
Nine months of worry and expectation
Brought more than imagination can conjure
Never really knew until…
I feel you coming
I am ready for you
I am ready for life
I am rejuvenated
I am Blessed
With the gift of life.

It has been my very great privilege to be part of Lula’s life in my extraordinary family. We have all been truly blessed with each other and with the loving friends who surround us.

2. ELIZA FACTOR (FRIEND, FOUNDER OF EXTREME KIDS AND CREW)

The first time I held Lula I was transported back to holding Felix when he was a baby. I had never held a baby who was as floppy as Felix before. And Felix, back then, also had red hair. I held her, thinking of Felix. Then she opened her eyes. They blasted into me. She was not Felix. She was very much her own self.

The experience of knowing her was immediate and deep. She connected to me like this: hand and fist.

How?

Back in the days when I didn’t know much about disability, the idea of living without being able to talk, swallow, barely move was so unbearably cruel, that I felt that the heart should just stop beating. Life would be torturous and not worth living. But I didn’t know people like Lula then. Her life was not all torture. And very much worth living. She was stripped of what almost everyone in this world takes for granted, and yet there she was, loving and being loved, connecting with people and the world around her as powerfully or perhaps even more powerfully than those of us with more conventional gifts.

Sam and Micaela very generously asked their friends and family to give donations in her honor to the community center for families with children with disabilities that I am helping to build, and because of this we have been receiving donations from all over the country and all over the world. Attached to these have come very touching notes speaking to the grief and sorrow and love that people all around the world feel for Lula.

This of course is a testament not only to Lula, but also her parents, who loved and celebrated her and did everything they possibly could to make her life as good as it was. Who are an inspiration and comfort to me, and who I would not have known without Lula.

In the words of my grandmother, who can no longer speak, but who, when she could speak was a great one with words, Lula was a “rare creature.” It was my grandmother’s phrase for people she particularly loved. Lula was a rare creature. I am grateful to her for teaching me, perhaps more strongly then ever before, how connected we all are.

3. CECELIA REMBERT AND (WITH SLAV AS BACKUP)

Nothing Gold Can Stay

Nature's first green is gold,
Her hardest hue to hold.
Her early leaf's a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.

- Robert Frost

4. TERRY WALKER (GRANDFATHER)

Hi—I’m Micaela’s Dad and Roan and Lula’s Granddad.
• As parents we have special protective feelings about our children. Especially when they are young, or sick. Micaela and Sam have had the benefit of this particular emotion for the last 18 months.
• When we learned that our grandchild, Lula, had profound disabilities we knew Micaela and Sam would be worried about her but, as parents, we were worried about them.
• Would they be able to cope? How would the stress affect them and their marriage? In my mind I had complete confidence in Micaela and Sam’s abilities to cope but in my gut I was worried. My mind told me one thing but my gut told me another.
There were three things that helped me:
• First, when we told friends about Lula’s disabilities, we could see that they thought it was an unremitting tragedy. But that wasn’t how we felt. One time my wife, Carolyn, surprised me by saying, “You know, viewed from Lula’s perspective, in some ways she lucked out. She couldn’t have had more wonderful parents or a more wonderful family”.
• Second, in this sort of situation you worry that the parents – in this case, our children --- will burden themselves with unrealistic ideas about what they can control and are responsible for. Maybe they can find a magic cure, a super pill or a revolutionary therapy. But I realized that they were far ahead of me when Micaela said “Lula is who Lula is meant to be and we love her”.
• And finally, we were all worried about the strain that being house bound put on the entire family, including Gracie. Last summer, Susan, Micaela’s mother, realized there would be no vacation for them this year. She suggested that Micaela, Sam and Roan make a weekend trip to visit their cousins in Philadelphia while she watched Lula. It was a generous offer but Micaela and Sam declined it. They said, thanks but when we make a family trip we take the entire family --- and that includes Lula. But Susan’s offer got them thinking. And, thanks to this thinking, Lula’s short life included a trip to a petting zoo where she fed a pig, a trip to the beach where she loved feeling the breeze on her face, apple picking and, at Halloween, a pumpkin patch. All essential elements of an American childhood that Lula was able to experience too. The pictures and videos of these trips are truly inspiring. When watching one of them I no longer had that awful feeling in my gut. I knew our kids would be OK.
Lula taught us so much and we will miss her.

5. JENNIFER WARD (FRIEND)

Hello everyone. It's an honor to be standing in front of such an amazing crowd. Lula really did know how to curate some of the best groups of people didn't she? I was not going to get up in front of you today as I have only been to two of these in my entire life. But I realized that Lula shared something extremely similar with another person whom I hold very dear to my heart. At the opposite life span spectrum, she is someone who has inspired me for decades. That person is my grandmother. 29 years ago, I was faced with the first funeral I would ever attend. It was for my great grandfather who would have turned 92 that year. As we sat at the gravesite, my grandmother sat next to me in the chair across from the tombstone and she said 'It's a shame that they only put the date they were born and the date they died, separated only by a dash. How could you possibly put all that life into one little dash? Promise me that you will make your dash spectacular.'

My grandmother is still with us and I continue to be inspired by her. And it is with this, that I was able to see such a spectacular dash in you Lula. What you did in 18 months is a far cry from what it takes entire lifetimes for some. Your determination, will power, strength and patience was fueled by the love and support that surrounded you. You, along with your brother Roan, could not have been born into a better family. What I have seen in Sam and Micaela in the last 18 months has been heartbreaking and breathtaking at the same time. For parents who have only been doing this for 18 months, I can't even begin to express how amazed and proud I am to call them my friends. I can only image how proud you are to call them your mom and dad. You touched so many hearts, brought families closer and will forever be side by side with Roan. What the caterpillar perceives is the end, to the butterfly is just the beginning. I am forever grateful to have been graced and inspired by such a beautiful little force. Albeit brief, your dash is spectacular Lula.

6. AGATHA PONICKLY (FRIEND, WITH LISA AS BACKUP)

Dear Lula,

I couldn’t wait to meet you when your mom and dad were finally able to bring you home from the hospital. I fell instantly and madly head over heals in love with you. I knew you weren’t MY little Lula-bean but it didn’t matter. I was hooked. I would find every excuse possible to stop by your house during the week and on weekends. I would tell your mom and dad that I wanted to stop by to visit them when in reality it was you I wanted to see and hold in my arms.

We became fast friends you and me.

The last time I got to hold you, we were by the lake in Prospect Park. Roan and your dad were watching the geese swim around. Your mom was taking photos. I held you and we looked out at the water. The breeze picked up and it blew through your hair. Your eyes popped wide open. I kept turning you towards the wind. You sighed in utter peace and contentment. I will hold that moment and memory deep in my heart always.

Thank you for coming into our lives little Lula-bean.

Thank you for allowing us to love you.

Thank you for showing us what it means to live a meaningful life filled with love, struggles, fierce determination and complete and utter joy.

I will love and miss you for all eternity.

Love,
Auntie Aggie

7. CAITLIN WALKER (AUNT)

Recently, Micaela and I were asked how long we had been close, to which we both replied “always”. When you’re born, your world starts small and gets progressively larger throughout your life. When my world was just our home, Micaela taught me about unconditional love. Aside from spending countless hours reading to me, playing in the park and tucking me in to bed, she made it clear that no matter how much I drove her crazy, she would always be there.

As my world got larger Micaela introduced me to a second type of love, the love of female friends. Micaela has always surrounded herself with the most amazing women I have the privilege of knowing. These women have taught me the importance of brunch, long phone calls and that true friends will always be there when you need them and true to form, they are all here today.

When Micaela brought Sam home for the first time, everyone instantly loved him. Not only because he’s great but because of the way he treated Micaela and the happiness her brought to her face. Through their respect and love for each other they taught me that the ever elusive, true love is a possibility.

The most recent type of love Micaela and Sam have taught me about is the love they have for their children. In every thought and action they put Roan and Lula first. The past two years have been a whirlwind and every decision they have made has been with their children’s best interest in mind. It is with this selflessness that Micaela and Sam traded their own sorrow for Lula’s peace.

Lula experienced and witnessed all of these types of love in her eighteen months here and I know that as Roan’s world gets bigger he will have the good fortune of learning about love from his parents, just as I did.

I would like to leave you with a quote from C.S. Lewis which reminds us to keep ourselves available to love.

“To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.”

8. SHARDA SEKARAN (ON BEHALF OF MICAELA)

The twins were due on my birthday, June 21st, the summer solstice. Throughout the pregnancy Sam and I resisted finding out the genders, but I knew I desperately wanted a girl. We had weekly sonograms in the third trimester and each time I reminded the technician; don’t tell us the genders. One day she let it slip: baby B was a girl. My heart was full.

They were born on June 11, 2010, the day after our fourth wedding anniversary. Roan Douglas Walker Murray at 11:37am, Lula Neave Walker Murray two minutes later. Roan and Neave are both islands off the north coast of Scotland, an inspired place that we both love. Lula was my maternal great grandmother and as I learned later, my paternal great grandmother as well. Roan burst out with a scream, but Lula was silent.

We never had a moment when we believed that Lula was healthy. From the first day an avalanche of mystery symptoms and deficiencies were piled on us by specialists; global developmental delay, hypotonia, poor eating reflexes, weak vocal chords, failure to thrive. But in her own complicated way she was utter perfection. She was sea green eyes and the softest skin imaginable.

Despite her catastrophically uncooperative body, Lula’s spirit emanated. She found a way to connect with all of us without any of the conventions of communication that we all take for granted. She couldn’t smile, cry, laugh, she couldn’t even hold her head up. But she was a brilliant little girl; she insisted on being held nearly 24 hours a day for her entire life. When you held her you couldn’t help but feel her very essence pouring through her skin. She oozed love through her pores to anyone lucky enough to hold her.

In eighteen months Lula was able to teach us everything that eluded us during a lifetime of conventional living. There is only one thing that means anything in this universe and that is love. There is no cause, job, accomplishment, or goal greater than to love and to be loved, to care for the people closest to you. Her needs and complexities stripped us of all the artifice of a life without meaning. She struggled to survive for eighteen months, through endless deficiencies, illnesses, procedures, tests, and hospital stays until she knew that we understood what she wanted us to know.

In the end the greatest gesture of love that we could return to her enchanting spirit was to release it from the beautiful but broken vessel that was her body. Lula died on December 4th, my grandmothers birthday. We were able to hold her, bathe her, kiss her, and rock her without the tubes, wires, machines, or needles. Losing Lula is a pain of withdrawal that has reset our heartbeats, that is only survivable because we have been engulfed in overwhelming love from friends and family. She has gifted her twin brother Roan with an ethereal sidekick who will be with him always. She has given us an indelible legacy. In the blink of an eye she has managed to reinvent us all.

I am a New York City girl, born and raised. My husband Sam and I live in Brooklyn. We have talents, interests, and lives outside of our kids but this blog is mostly about our kids Roan and Lula and my life as a mom. They were born June 11, 2010.

Lula Neave died on December 4, 2011. Our lives in between those two days and beyond are all in the archive of this blog.